OUR LONG WEEKEND OF HELL

(30 March till 2nd April, 2013)

 

 

As Rob sleeps and lives in his electric wheelchair he also is cleaned in it. It is actually easier than when he is in a bed, less complicated, less painful, more practical and quicker. To put him in bed requires hoisting him in a sling that is traumatic and painful and very tiring for me. Then a lot of effort placing him back correctly in the wheelchair afterward. 

 

His wheelchair's back opens up like he is in a dentist chair as seen in the above photo. Without this feature I'd not be able to care for him nor could he reposition himself throughout the day to alleviate some of the chronic hip pain. Though this enables me to clean him more effectively I still have to wrench his legs apart constantly fighting his leg's strong chronic contractures. This naturally has him yell out in pain. But there's no other appropriate option. Pain killers do not work and muscle relaxants compromise his ability to swallow even his own spit thus increasing his risk of choking.

 

Seeing and hearing Rob's pain puts employed carers off and before long they no longer can handle being around him. Nor are they willing to inflict the horrendous pain on Rob that is needed to clean him. Seeing the person I love most in such pain and suffering for over 19 years tears me apart. This past week I've had to take tranquilisers to dull my emotional pain and increase my pain killer consumption. I've myopathy and brittle bones. At any moment I can break a rib or any bone without warning or tear a muscle. This knowledge is stressful for both Rob and me. The guilt Rob has to live with everyday seeing me in pain has me also feel bad that I do not toss him in a institution like a piece of rubbish where he can die like he has requested. But in the same breath he says he is terrified - and rightly so - as he knows he will suffer a long painful death due to such facilities being unable to care for him appropriately. It's not dying that bothers him; it is how he would die. I would allow him his request. But not to die a death that even animals are not put through unless at the hands of sadists. 

 

All this pain and suffering is and has been totally unnecessary for both of us. Without his legs he and I would be free of the emotional and physical pain and could get on with our lives. It seems no matter how hard we try to help ourselves it is to no avail as those who can help Rob won't and those who want to and could are not permitted. It all boils down to bureaucratic political medical red tape from the public health system controlled by a very small group of power hungry proud doctors mostly within the public health system. Red tape that is costing the Australian tax payer countless millions of dollars annually by inflicting inappropriate medical treatment/procedures on thousands in Australia. Resulting in emotional and psychological trauma, physical mutilation, preventable deaths and permanent disability to some leading to a life time of reliance on the welfare system. Some who could return to or take up full/part time work and become productive citizens of Australia's community.

 

 Rob and I could be active citizens but instead are house bound and sinking deeper and deeper into poverty. Held to ransom by a powerful ruthless few who will do anything to keep their power over helpless and vulnerable individuals and those who try to help them. A powerful public medical machine that will crush anyone that gets in it's way; something one of our general practitioners said to me many years ago that has and continues to come true.

 

 

The couple of pictures above were taken today while changing his butt cushion and cleaning away the daily abundant dead stinky skin and plasma soaked nappies followed by a good application of Tiger Balm that is helping with the itch and pain and keeping infection at bay and promoting healing. His legs all the while having a life of their own.

 

FACTS:

It costs $2,500 daily to keep Rob in hospital doing nothing and dosed up with pain killers that are ineffective.

 

Costs $800 a day to condemn him to an institution where he will not get appropriate care as these places are understaffed and unqualified to care for those with severe cerebral palsy or the like. Care facilities that are in reality not available as they do not take in individuals with Rob's complex needs such as maintenance of his skin condition, psychological distress and severe depression, physical pain and difficulty in addressing his hygiene without causing trauma and elevated pain.

An operation to remove his legs just above the knee with total tendon release of the groin would cost about $30,000. Enable Rob to remain at home, be a contributing part of society and live a long mostly painless life with his family.

WHERE IS THE LOGIC OF THE PUBLIC HEALTH SYSTEM?? A system that would prefer to spend tax payers' money on committing a viable human being to a bed ridden life in hospital at the cost of $2,500 a day for months on end or even years.

How can anyone legitimise:

365 (days) x $2,500 (hospital care) = $912,500 annually.

Or:

365 (days) x $800 (inappropriate institutional care) = $292,000 annually.

 

Compared to $30,000 for a liberating operation that has already been confirmed to be the most reasonable solution by a world leading orthopaedic surgeon (and others who have had to try and care for Rob) that would address most of Rob's physical immobility issues and eliminate most of the difficulties faced by his carers dealing with his hygiene needs. The public systems only reluctance to remove his legs is a fear of posible phantom pain issues that Rob is fully aware of and prepared to risk. After all, could he really be in any worse a situation! And the fact that he could be is a moot point, when one considers that his present situation has him begging for a lethal injection as recorded in his hospital file.

 

ratwoodies@yahoo.com



 

PELVIC SORE OUTBREAK

(29-03-2013)

 

Psoriasis is out of control again both right and left and scrotum. The unbearable itching was relieved by applying Tiger Balm. Rob says the pain and itch level has dropped from a 6 to a 2.

 

 

29-03-2013 Before application of Tiger Balm.

 

 

03-04-2013 Tiger Balm seems to be helping with healing.

 

Rob won't be wearing wafers for a couple of days for his colostomy. The above may have happened as the last time I changed his colostomy I did not ice the entire area. During moving house I failed to place a fresh large ice block in the freezer. So last night I wrapped a whole frozen peach in a plastic bag and used that. He's presently padded with cloth nappies to catch any poo. And I've rolled up two cloth nappies to place between his belly and top leg crease and groin/scrotum area to make for extra absorption of sweat and plasma from the heavily weeping sores.

 

 

I've put in place Rob's short padded penis protector (tube) to stop his legs crushing his penis that's prevented wearing a urodome for several days due to pressure sores. Hopefully he will be able to wear a urodome again tomorrow. Until then, when he needs to pee he tilts his electric wheelchair forward and a plastic bag is placed over the tube so he can pee into it.

 

Note the left leg is strapped down to the wheelchair to prevent it wandering left-wards; causing more hip twist and shifting his butt out of place and forcing the right lower back pressure area to push heavily against his back cushion. Yellow nappy is catching any poo and the white nappies are absorbing the sweat and body plasma. Blue material stops the plastic tubing coming in contact with Rob's skin.

 

 

Most of the raw skin has healed along the upper leg and pubic crease area with the application of Tiger Balm and rolled up cloth nappies for extra absorbtion of sweat and body plasm (Updated: 03-04-2013).



 

PENIS PRESSURE SORES

 

 

Rob's penis has ended up looking like his face.

 

His legs have been crushing his penis with the usual above result. Also swelling up. Very itchy and oozing plasma from his scrotum also. Driving him mad and frustrating him that I'm the only one who can deal with the problems as I'm here with him 24/7; is the only one who can clean and dry him properly and I'm the only one who can put him through the pain of being cleaned and moved without freaking out.
 

 

Applying Tiger Balm onto the penis and also inside. First time Rob asked me to do this I only applied a small amount of the Balm just in case it was not a good idea. It did not burn him and though there was an intense burning feeling it was far preferable to the maddening itch. Nor did he swell up. The Balm kills off bacteria and encourages blood flow and the heat encourages white blood cells to accumulate at the site and speed up healing as it fools the cells into thinking there is a heat producing infection.

 

 

Plasma from Rob's scrotum oozing onto his longer penis tube that he has to wear again to urinate while it heals. I hate leaving it in place but presently we are moving house and he needs something to pee into while I leave him for a couple of hours travelling up and down like a yo-yo on my electric mobility scooter.

 

 But tonight (21-03-2013) he's wearing a plastic bag. I pull his penis through a small hole that expands until the base of the penis is reached and makes a snug fit. He's already had an application of Tiger Balm and once the penis is in place a nappy is wrapped around the penis so the plastic isn't touching much skin. With moving house I forgot to refill the ice cube tray so I couldn't ice the sores.

 

 Above: Rob's scrotum/under legs last night (24-03-2013).

 

 

 

 

Also last night, Rob's penal pressure sore was the size of my thumb nail. He's going to have to wear has shorter penis tube again to stop the legs crushing his penis. Not being able to wear a urodome is tiring for both of us and produces lots of washing and work. Presently, Rob and my life revolves entirely around cleaning his open skin sores so he doesn't end up in hospital again, bed ridden and dosed up on pain killers due to incorrect positioning.

A heavy application of bicarbonate of soda paste looks like the next step packed with cloth nappies to soak up the plasma. Or extra virgin olive oil has pretty good healing affects. Applied a heavy layer of papaw ointment last night to the entire pubic region and under legs.

Rob has an appointment with a public orthopaedic surgeon on Wednesday 27th March. Looks like tendon release is the only option presently.

___________________________________
April, 2013

 

 

April 13th. One side of penis.

 

April 13th. Other side of penis.

 

Robbie admitted to hospital - again - April 15th, with deep pressure sore in lower right back due to worsening twist in hip. Still waiting for surgery date for minor tendon release!! He's still waiting for his dream to come true where he will be able to sleep in a bed again free from most of his pain.



 



 

PSORIASIS OUTBREAK
(21-03-2013)

 

 

 Bi Carb paste applied 20-03-2013.

 

 

After removing flaking skin.

 

 

Rob doesn't usually bleed this badly with the psoriasis.

 

 

Bi Carb paste application. Still weeping in areas that are not yet white.

 

 

Two hours later the weeping has stopped and Bi Carb mostly dried.

Rob had this outbreak as I'd not applied a saturated solution of Bi Carb for a few days. I've been run off my feet moving house. Thankfully his wheelchair came back from repairs a couple days before the move so he has been able to play more with his iPad and has been sailing through his 'Game of Thrones' novels. And not being confined to bed I've been able to leave his side more to make the house shift. I am exhausted so his face skin care went a little off track.

 

I'll update this page in a week's time to show the progress of the healing.

 

*****

 

 

22-03-2013. Before removal of dead skin.

 

 

22-03-2013. After clean up and application of Bi Carb paste.

 

 

24-03-2013. Before removal of dead skin.

 

 

24-03-2013. After dead skin removed.

 

 

24-03-2013. Fresh application of Bi Carb paste and a shave.

 

 

28th March, 2013, with Sorbolene moisturiser to make ready for removal of any remaining flakes of skin. After care is a saturated solution of Bi Carb every two to three days to keep the skin in an alkaline environment.



 

 

Rob's ear goo 18th March, 2013.
After nine weeks bedridden on his left side.

 

 

Left ear wax. Dry but plentiful. Needs flushing.

 

 

 

 

Right ear wax; soggy due to the ear not draining during the nine weeks Rob was on his left side. It took a couple of days for his balance to return once this large chunk came away of it's own accord after sitting in his wheelchair since the 14th of March. Then fished out carefully with a cotton bud without flushing. Before the wax fell out he zig zagged all over the place when driving his electric wheelchair.

Bought an otoscope a couple of years ago to check Rob's ears as he's very prone to ear infections due to an incredibly high production of wax over a very short period of time. I've learnt how to safely flush his ears out but was never sure how much had accumilate, where and if all had been removed until this nifty little light came into our lives.



 

13/03/13

 

 

Two days after packing cloth nappies between Robbie's leg creases the sores are dry and scabs have already formed and fallen off mostly. Also maddeningly itchy for him. Applied more zinc and Castor oil cream. Fortunately Robbie's skin heals very quickly as the psoriasis causes the skin to reproduce cells at an incredible rate.

This is where a nappy slipped out and the crease dividing the tummy and pubic area remained damp. As a result the skin opened up. It takes less than a day for Robbie's skin to become compromised, soggy and peel off leaving open sores. Above and below the cracked crease are the odd pus filled sores that have sprung up over the past few weeks. Sores he's never had before in this area. Lanced, gently rubbed with ice and either paw paw or zinc and Castor oil cream applied. Keeping a nappy in place is very difficult for the usual reasons. This area became unbearably itchy so Robbie choose to have tiger balm applied for relief. Again icing any sores or wounds is routine method of killing any bacteria, established and/or potential infection.

Complications over keeping a urodome on over the past few days has made keeping the soggy sores dry more problematic. The increasing amount needed and area covered with oil based creams also compromise the adhesive of the urodomes and the Hypafix reinforcement when any cloth barrier between a urodome and legs skin is displaced by his powerful contractures. Plasters are not appropriate as they pucker up, also compromised by the oils and can tear Robbie's fragile skin if removed too soon. Also, in the past, any infection that may build up under the plasters has sometimes been overlooked as the sores were not visible under plasters. So it's always a case of clean; ice; pat dry; cream/oil and try and keep dry. Aeration is not possible.

 



 

11/03/13

 

 

 

This is me using my feet to separate Rob's legs today in order to get to his groin area. Good thing I'm hypermobile in every joint of my body. The pull of the contractures is incredible!! No wonder he's in pain! But I have to be careful as I've brittle bones and don't want to end up breaking another rib or something. When I've no one to help hold his legs this is what I have to do. Then when in position clean the area and apply whatever cream needed all the while reminding him to look up and not down or he involuntarily curls up into a ball. Fortunately, a carer comes around to help at the moment so she talks to him for distraction. Very helpful.

 

 I've been packing his groin area with cloth nappies the past two days in an attempt to dry up the soggy skin along with zinc and caster oil. Fortunately it has worked. But it is exhausting for Rob (and not to forget traumatic and painful) to have his legs pried apart but no other option. Taking muscle relaxants compromises his throat muscles and raises the risks of not only choking on his food and drink but also his own saliva.

The longer tube leading into a plastic bag that I put together for a non spill urination device is also helping. Though it can not be left in place as his legs displace it. But it would not be wise to leave it in place long term (all day) as the tubing would rub and dig in causing its own problems. So he has to call whenever he needs to wee. Good thing I've a good supply of cloth nappies and a drier.



COLOSTOMY CHANGE

Here's Rob with his head covered so I can change his colostomy. If he's not blind folded he lifts his head involuntarily and ends up curled up in a ball making it impossible for me to get to the colostomy. Rob's had a colostomy since 2000. At first no surgeon would give him a colostomy despite his bowels not working correctly even with suppositories. He was told he could wear nappies.

A year later a surgeon agreed to the colostomy only after I had burnt out trying to care for Rob with our lives dictated and controlled by his lack of bowel motions. The colostomy has been one of the best things ever to happen to Rob and I. Only recently a product seller of colostomy gear informed us that it's quite common for a severely effected cerebral palsy sufferer to have a colostomy to make caring and cleaning easier and more hygienic. We should not have had to fight for such an operation that was only performed after I had collapsed trying to care for him and coming dangerously close to him being unnecessarily institutionalised.

There's no question that the colostomy has given Rob and I much freedom and dignity. No one likes sitting in his or her excrement so to be told he could sit in nappies was shameful. Rob was old enough to make his own informed decision regarding the procedure that we'll be ever grateful to the surgeon for performing.

Having left a wet warm flannel over the stoma for a small while to soften any waste matter and gum from the wafer I gently wipe away any mess with a damp flannel.

Close up of the stoma and surrounding skin. Note that despite poo having been sitting on his skin between it and the wafer for two days his skin is not burnt. I've deliberately left him with the poo/skin contact to illustrate that there's no need to panic - in Rob's case - if he does not immediately have a wafer change if it is compromised. But when he has watery stools - diarrhea (dx) - he must be changed if it has undermined the wafer or the wasted does burn his skin.

Rob always bleeds when cleaned. But nothing to worry about. The colon has very small and fragile blood vessels that are easily damaged. And due to the size of the vessels they quickly clog with blood platelets.

This was taken some minutes after the cleaning and a careful dabbing away of excess clotted blood showing how soon any bleeding stops.

I always ice the area with each colostomy change whether there's inflammation, rash, sores or clear skin. I keep a large cube of ice in the freezer for the sole purpose of icing the stoma. It's kept in several plastic bags for hygiene reasons but applied directly to the skin out of the bags so I can rub it gently over the skin in a slow circular motion so as not to cause any friction and ice burn. There will be a slight bleeding again that pretty much stops immediately. I pat dry the area with cotton flannel. Ice kills any bacteria on and/or just under the skin. Speeds up the healing process when the body does not have to battle bacteria or inflammation.

Here's the adhesive side of the wafer with the addition of a putty ring called 'Cohesive' as Rob's stoma sinks into his abdomen so is not flush or raised like many a stoma. The putty helps prevent or reduce the incidence of the wafer being undermined by any waste. As Rob can not check his own colostomy and push down the waste I have to check it several times a day.

This is a picture of Rob's two piece set up; the upper side of the wafer and the bag to be attached.

Wafer and putty applied to stoma. After placing it I firmly push down a folded flannel with the palm of my hand to make sure it sticks more firmly.

As Rob's legs prevent him from airing out he has worsening sores between his top leg crease and pubic area. Care must be taken that no waste gets on the sores and if it does a thorough cleaning is given immediately or flesh eating bacteria could cause deadly results. When he's sitting in his wheelchair I always place a thick layer of cloth nappy between the colostomy and his groin area to make sure no waste spills into the creases if the colostomy leaks anytime. Often his upper right leg has pushed the waste under the wafer when it has crushed the bag due to muscle contractures. So the nappies are essential. The contractures compromising the wafers make for a lot of smell, washing and time consuming cleaning, but most of all are a cause of increased infection risk.

Some years ago we discovered by accident the beauties of Fixamol/Hypafix. To help the wafer stick and keep waste from spilling out as quickly when compromised I cut out four strips of Hypafix to adhere to the four edges of the wafer and skin. Generally the wafer only needs changing every four days when Rob is cleaned properly and the two piece applied correctly and checked regularly. Two pieces are great as the bag can either be emptied and reused - which we do most of the time - or disposed of altogether without disturbing the wafer. The less the wafer is removed the kinder it is to Rob's sensitive skin. This is another reason I tend to let the wafer start coming off by itself before changing it. Thus the reason I also needed to know how long his skin could be exposed to firm stools without causing sores or rashes.

Here's a view of a bag now attached to the wafer. I also make a small hole at the very top of the bag to help gas escape. This has been a huge help preventing the bag blowing up with the obvious messy consequences. It also means I don't have to check it so much for gas. But when he's got dx the watery stools can leak out the hole so care must be taken. It was terrible when Rob had no colostomy and he had a bout of dx. Yes, hygiene and cleaning has definitely improved with the colostomy.

Rob first had the colostomy done on the left side in 2000 but not without drama. Firstly, a loop colostomy was performed. When it was shown to be inappropriate a permanent one, as we originally requested, was performed and is the style he has now. The original loop colostomy kept on prolapsing resulting in numerous visits to the accidents and emergency department to have it literally stuffed back into his abdomen. Eventually a surgeon showed me how to stuff it back. He sprinkled sugar on the protruding bowel that shrank it. Then the bowel was carefully teased back into the abdomen. Good thing I was born with a strong stomach and have no trouble handling inners, even with my bare hands.

Some time after the permanent colostomy I noticed a huge lump about the size of a grapefruit under the stoma site and immediately took Rob to the GP. She freaked out. So I took Rob to the hospital where he was diagnosed with a rare desmoid tumor. Five surgeons got together to discuss the case and had him under the knife immediately. The stoma was relocated to the right side.

Though plied with antibiotics he left hospital with an infection at the operation site where the tumor had been. Mesh had been placed where a huge 10x10 cm of abdomen had been cut away. But we all thought the infection would go away with a few more days of antibiotics. Six months later - after I was daily flushing the wound site out with ice salt water and application of ice packs to the wound site - I was getting pretty sick of the infection that some bloody community nurse accused me of causing!!

I insisted on seeing the head surgeon who had performed the surgery in the first place and not the surgeons training under him whom Rob had been seeing as an outpatient. He was furious as no one had told him of the ongoing infection. Rob was immediately admitted and the mesh removed. But something very strange had happened. When Rob was opened up the missing abdomen flesh had regrown so the mesh could be removed and there was now no fear of a hernia bulging from his abdomen. We've fortunately had no real problems with the colostomy ever since.

The only thing I find hard to stomach is the mucus that leaks from Rob's butt occasionally as the anal passage's mucous membrane is still there and still produces mucus. I mention this as many people unfamiliar with colostomies do not realise this can happen depending on the sort of colostomy performed and each individual is different. So when something 'strange' comes out of his bottom concern and alarm bells ring. No need. All's good. And since the mucus resembles snot if feel a little queasy as snot is about the only thing I can not handle well. Blood and guts, vomit and poo fine. But not mucus because it resembles snot.

PHYSIO HELL

Here's Sam giving me a massage to loosen my upper leg tendons. And yes, he's qualified. It's excruciating. This is what I'd also have to go through for the rest of my life if I had surgical tendon release which I had as a child and it failed as physiotherapy was not given post op. At the age of 40 my legs are now deformed where as a child they were still viable. I've been offered a repeat of the surgery. But at the end of the day I'd still have useless legs with a life that revolved around taking organ damaging and toxic, heavy doses of pain killers; muscle relaxants (that make me drool and loosen my throat muscles increasing my choke rusks); and excruciating painful physiotherapy as my legs are now deformed and not viable.

Without my legs I'd not have this hell to go through presently. Nor would I be bed ridden as I am now. Nor would I be suffering the potentially deadly skin problems I am having. Pressure sores and skin infections kill hundreds annually and now I am just waiting my turn. Nor would I be stressing all those battling to care for me and are traumatized by seeing the pain I am in everyday all day. Sam, who's had to deal with this for nineteen years, can only do and take so much, and I can only continue to wish I were dead.

Shame the surgeon who had the final say on my fate and has condemned me to this existence of hell isn't given the assignment of looking after me for a couple of weeks all by himself without any help and see what the Hippocratic oath not to harm really means.